Tysabri Users Getting Potassium Tested?

[rickalex2]

I recently asked the question if anyone has low potassium levels while on Tysabri and got one response. Then I realized that maybe your Neuro's aren't checking your potassium levels regularly. So my new question is just that, "Is your Neurologist checking your potassium levels on a regular basis?"

Potassium is VERY important. It can cause pain and fatigue if it is low. Steroids can bring your potassium levels down and you might be shrugging off your symptoms as just being the MS, when it might be your potassium! Potassium effects your muscles! Which means your heart!

I personally cannot keep my potassium levels up. I have to take over 9,750 mgs (13 pills a day) just to keep my potassium at the minimum 3.4!! If it falls to the 2's, your heart can be effected.. racing heart.. possible stroke.. you name it. I've been there! My doctor cannot figure out WHY I can't keep potassium in my system without all these supplements. I am suspecting its the Tysabri because its been since I've been on Tysabri that it started. So.. the next time your at the doctor, have them check your potassium!! If your low, supplements can help with fatigue and muscle pain that you might be mistaking for nerve pain and MS fatigue!! And please let me know if you are low. We may need to let the folks at Tysabri know so they can warn people!!

[LL60]

I had to go and check my blood tests.
My potassium levels actually went up some the first two years I was Tysabri. In August, my lastest tests, it was down some but still within normal limits.

I don't know what to tell you. But you wanted to know about others levels. My neuro doesn't check them, but I get my PC to check them each year because fatiuge is always a huge complaint of mine. So we check anything that can cause it. Everything is always normal or better.

[rickalex2]

Thanks for the input! Appreciate any and all information people are experiencing! I have to say that I've been on Tysabri 4 and 1/2 years and I was seeing a different General Physician the first year and a half of my treatments so I don't know what my potassium was in the beginning.. I would imagine she "did" test me once and awhile though so I should really try to get those results.

I didn't realize my potassium was low until 2009 and it was in the 2's! Not good. But to be really honest, I didn't take it very serious. I didn't think Potassium was a big deal and I took the supplements when I remembered to and once I finally got it to a normal level I quit taking them.. not knowing it would go back down... and it did! Then I started reading more about it and found out how IMPORTANT it is and how it in a way can mimick your MS symptoms! Thanks again for responding!

[1dayitwillNd]

I've been feeling like i've been having higher blood pressure and more ms symptoms the last couple days after my most recent Ty infusion. I went to the ER in August and they tested my blood levels for potassium and it was low. I wonder if I should get that tested again. The multivitamin I take may not be enough...

[Andy75]

No

My MS docs have not, but I will request it next time. I have experienced pain, especially in my joints, since starting Ty.

[pennstater]

My neuro has my blood checked every 4 months and includes potassium. So far, all normal.

[Echo2099]

I am not on Tysabri yet, but will be starting it the end of this week.

My Dr checked all my blood work 2 weeks ago and I see my potassium was 3.8, which I think is the low end of normal. I've not heard of low potassium as a side effect or problem with Tysabri, but I will certainly ask my doc to keep an eye on it.

Thanks for the heads up.

[rickalex2]

The low is usually 3.4 to 3.6 so your just above the low. But thats good compared to my numbers. Although, after 3 years I found a new General doctor who thinks she knows whats wrong!! Finally!! I drink LOTS of water! I had no idea that drinking too much water can be bad for you!! I have a couple cups of coffee a day and then I carry water wherever I go and at night I drink tea and sometimes I have a soda. Over 158 ozs of liquid a day!! And a lady should only drink around 77 ozs.. men around 120. I have been peeing out all my electrolytes and potassium!! So we think anyway, but it makes sense so we'll see.

[LL60]

some stupid unaware radio staion here did a contest to see who could drink the most water - a lady died!!!!!! It totally flushes out all the electrolights from your system.